One minute at a time…

August 20, 2018 Tracy1 Comment

When my alarm goes off at 9 AM to remind me to take my morning medication, I grab my bed remote sit up a little bit, take my meds. Then, normally I will call to my son to bring me a cup of coffee and try and start my day. However, for the past week or so my alarm goes off, I will grab my remote to sit up and take my meds, and then I just lie back to go to sleep. I was in that mode of, why does it matter if I wake up right now, the same thing that happened yesterday it’s going to happen today so who cares. When you’re bedridden, one day rolls right into the next. Every night I go to bed I know that the next morning I will be in the same place doing the same things for the whole day.

Then, finally, at around 1 PM I told myself and to pull up my imaginary bootstraps and wake the hell up. It was really hard to do. I literally saw no reason for me to actually awaken. But, I did, and I made it through this day. Minute by minute is the only thing I can hold onto. Any longer than that and I’m not sure what would happen…

The one thing I do know and I am very sure of… I AM an MS Warrior!

Have courage and be kind!

Anger · Family · Fear · Health · Hope · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Bedridden…

July 23, 2018 Tracy7 Comments

bedridden

[bed-rid-n]

1. confined to bed because of illness, injury,etc.

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I’m not sure what’s going on right now. I am starting to have a hard time being confined to my prison that is my body. It’s now been four years and eight months that I have been in this bed 95% of the time. I think I’m going a little mad. 😳 More so than normal. 😉 There are so many things that need to be done in my home and it’s making me crazy that I can’t do any of it. And with this finding of my fracture of my back at L1 my mind can’t stop thinking. Is that fracture what caused my legs to completely stop working or is it the MS? The doctors say there’s no way to tell. Will that fracture make it so I’ll never be able to stand or transfer again? That’s a question I completely forgot to ask at my last pain management doctor appointment. I could just hit myself for forgetting to ask that question. But when I’m there I am so confused and I don’t feel like they even care about it. I mean why should they, right?!

Is it completely futile to keep trying to move? I woke up this morning when my alarm went off and slept right through it. My thoughts were, what’s the point? I might as well just sleep because I can’t do anything else. Around noon I woke up, raised my bed, and my son brought me coffee. I did a few things around Facebook and then came in here to write this blog. I don’t even know what I’m trying to say. I have so many ideas in my head of things I wanna do to help my family. But then reality hits and I can’t really do much to help anyone. I can’t even help myself. I don’t mean that in a pity way. I literally cannot do things for myself. When I talk bedridden that’s exactly what I mean. Maybe bedbound would be better because I am bound to my bed. 🤔

I think the part that makes me crazy is that I know what needs to get done in my home and there’s no way to get it done. My kids work, my husband works 50 hours a week and has a three Hour round-trip drive – sometimes more depending on traffic. We can’t afford someone to come in and clean and help me, so WTF! 😥 Even on the rare occasion that I get up in my wheelchair to go to a doctors appointment, I can’t do anything around the house because the pain is so paralyzing.

The one thing I cannot stress enough people, is if you have the chance to do something and you are able, do it! Don’t wait. I guarantee if you do you have regret for the rest of your life.

I know, I’m kind of all over the place with this blog because, as I stated above, I’m not sure what I’m even trying to say. I’m working so hard about keeping a positive attitude. There are days when it’s very hard to do so. I know that right now I’m just having a few bad days and it’s not a bad life. Right?

I’m trying, I really am! I’m just waiting for the universe to cut us a break. We need help and I’m not sure how to get that help. I’ve always taking care of things even from this bed and now I feel pretty hopeless and helpless. But, I truly am a warrior, and I will fight and I will find a way for my family if it’s the last thing I do! And the reason why, is because I’m the mommy!! 🖤

Have courage and be kind!

Anger · Health · Primary Progressive MS · Ramblings

When?

September 29, 2017September 29, 2017 Tracy9 Comments

Primary progressive multiple sclerosis, end stage. There is no medication for it, there is no remission, there is no cure. So when do you say enough?

I lie in my bed 24 hours a day seven days a week. When I do get into my wheelchair the pain is so bad I can’t sit for more than 30 minutes to an hour. So I don’t get it my wheelchair. Even lying in my bed I have pain constantly.

I no longer have the caregiver as I cannot afford one. Hospice won’t even take me. They don’t consider what I have terminal. I guess it’s OK that I live another 20 years lying in a bed in constant pain. If that’s not terminal I don’t know what is. Fuck you hospice!

Dr. Kevorkian knew what my type of illness did to a person. He helped them die with dignity before they became so bad that they could do nothing for themselves. I’m already there I can literally do nothing for myself. Except talk text and look at my phone and use a remote control to watch endless hours of television until my brain goes numb.

I have a hard time holding utensils now. But I guess it’s OK if I just become a head in a bed that is in constant pain. People say tomorrow’s another day. Not for me, tomorrow is the same thing, every day for the rest of my life.

The new so-called medication for progressive MS is a big farce. Maybe it will help secondary progressive but that’s not even in the same league as primary progressive. Ocrevus, The manufacturer, when I called them basically told me I’m too far gone. On the disability scale I’m an 8.2. So I can’t take the medication. But they don’t really give you a reason why.

I’m not looking for pity I’m not looking for any ones I’m sorry’s, I’m bringing about awareness to a disease that is looked at as a basic, oh well you have MS, disease. It’s not basic it’s like living in hell.

I’m off, as I can barely talk without crying anymore. I just want to have some control over my own life and not die a rotting shell of the person I once was.